Month: December 2016

About two months ago, during school, I happened to see Gabriel during one of his breaks.

He was sitting outside on some bleachers, deep in the middle of a group of boys.

This both shocked and excited me, because this was different! He usually spends his breaks either sitting by himself on the bleachers, or just kind of wanders around by himself, killing time until the next class.

So, as I looked closer, not only was he sitting amongst a group of boys, he was talking! Like, in a highly animated way, as if he was telling a story.

This was A-MAZ-ing!

I came even closer as I wanted to see exactly who he was talking to, so I could make mental notes of who the boys were who were being so nice to him and listening to whatever he had to say.

And then, my heart dropped from out of the clouds.

No one was looking at him or paying attention to him. He was having a full-on, highly animated conversation – with himself.

This was new; I’d never seen him do this before.

And not only had I never seen him talk to himself before, I most certainly never saw him do this while sitting in the middle of a group of boys.

–Oh my sweet angel, WHAT are you doing? Are you SO longing for a friend that you’ve created an imaginary friend? Or, have you become so desperate for others’ attention that you’re now behaving in a manner which you believe will give you attention? AND, you must no longer care if that attention is negative?–

I fought back tears, felt my stomach sink, and just sat there awhile and watched him. He couldn’t see me (and I was very thankful for this) as I didn’t want him to catch me watching him while I was undoubtedly looking so heartbroken. (I was watching from inside our Middle School teachers’ lounge – which has dark tinted windows that prevents students from seeing in.)

I carefully studied the boys sitting around him, waiting for a side look from one of them, or a comment, or any minuscule hint of bullying – which would have automatically launched me off that couch and outside to deal with it in a second – but, they all seemed to be so engrossed in their own conversations that they either didn’t notice him, OR, they were all doing an excellent job of ignoring him.

I watched for a few more painful minutes, and he finally seemed to settle down a little, and then thankfully, the bell rang and they all got up and dispersed to their classes.

I knew he had dodged a massive bullet, and I started to plan out what I was going to say to him that evening about it.

So that night, I sat him down and gently said,

Me: “Gabriel, I saw you today during one of your breaks, when you were sitting with a group of boys. Do you remember that break?”

Gabriel: “Yes.”

Me: “It looked like you were talking to someone. Who were you talking to?”

Gabriel: Silence

Me: “Can you tell me?”

Gabriel: Confused and afraid glance

Me: “Gabriel, were you talking to yourself?”

Gabriel:“Yes.”

Me: “Do you know why?”

Gabriel: “No.”

Me: “Gabriel, it’s OK to talk to yourself. People do it all the time – but they do it when they’re by themselves, in private. Like when you’re at home in your room. But, when we’re around other people, like at school, if we have thoughts in our heads, we need to try and keep them in our heads and not let them come out of our mouths – unless we are talking to another person. “

Gabriel: Nods head, “Ok.”

*Long Pause*

Gabriel:“Mommy, maybe my Autism made me do it?”

Me: “You might be right, Gabriel, and that’s OK. Remember we said that Autism is a brain difference? This might be one of those differences, and again, that’s OK. You can control this. When you’re at home or by yourself, you can definitely talk aloud to yourself if it makes you feel better. OK?

Gabriel: Silence, thinking.

Gabriel:“Mommy, why did Jesus make me Autism?”

Oh my God.

–I catch my breath and pray a three-second prayer for the right words–

Me: “Gabriel, Jesus loves you, and He made you in a very special way. There’s no one in the entire world the same as you. Jesus created you just the way you are, and He wants you to do wonderful things.

Your autism is what makes you, you. Please remember it’s not a bad thing; it’s a difference. And there are many ways that your Autism helps you. You know how you can remember so many things? So many details of all the places we’ve been and the things we’ve seen? You know how you can remember so many of the world’s different currencies and how you know all of the different “Wonders of the World” structures and where they are? How you can remember so many of the different flight times between all the places we’ve been?

Your autism helps you remember all of these wonderful things, and it’s going to continue to help you learn as you get older. What we have to do is use your autism for the good things, and control it when it wants you to do things that might actually be a little too different – like what happened today with talking to yourself.”

Long Pause

Me: “Do you understand what I’ve said?”

Gabriel: “Yes.”

Me: “Can you tell me what I just said?” (which I have to do because any time I ask him if he understands something I’ve said, his default answer is always “Yes.”)

Gabriel: gives me a pretty good, abbreviated version, hitting the important points of how he’s special and he can remember a lot of things, and how Jesus loves him.

I was relieved with his answer, but he still didn’t seem completely convinced. At this point, he kept trying to leave the room, so we took a break from the conversation.

And I believe it worked, because I haven’t seen him talk to himself since.

But, in true autism fashion, Gabriel still tends to repeat questions – so I’ve had to re-answer the question, “Why did Jesus make me Autism?” probably 8-10 more times.

And every time, I try to remind him of the fact that Jesus loves him, he was created exactly the way Jesus intended, and that he can use his autism for good.

But the problem is (and I’ll never tell Gabriel/ Noah/Samuel this) that I’ve asked Jesus the same thing a million times.

Jesus, WHY did you make my children autism?

Because I hate autism. With every fiber of my being.

I don’t want it around. I want it out of our lives. I don’t want to figure out how to use it for good – I just want it to disappear and stop clouding my children’s (and my students’) minds.

And believe me, I want to believe everything I’ve said to Gabriel – that Jesus made him exactly how He intended. But this is where I don’t understand Jesus’ reasoning.

The negative effects resulting from autism have, by and large, outweighed the positive effects.

So again, why???? Why our children? And why us?

Anyways, this is my daily struggle – asking questions to which I’ll probably never know the answers.

So honestly, it’s here to stay, so why fight it, I guess?

Just turn that fight into a fight for inclusion and acceptance, constantly try to help those with special needs improve their lives, and continuously search for new ways to use autism for the good.

This makes them feel comfortable and secure, and in Autism research, there is overwhelming proof that people with Autism thrive more in every way when you place them in a very stable environment.

So sure – this is great in theory, but highly unrealistic.

Life doesn’t work this way.

So, what do you do when you have a child with Autism who is about to go through a situation that is completely new, and potentially painful, in a strange place with strange people?

Namely, a dental surgery?

AND, couple this with the fact that Gabriel was just five years old, and had a serious receptive and expressive speech delay that allowed him to communicate like a two-year-old.

Meaning, yes, we could try and tell him what was about to happen and the reasons for it, but we wouldn’t have any guarantees that he would understand anything we were saying.

There was no such ability to have the following conversation:

Mom: “Gabriel, you have some teeth that need to be fixed, so we’re going to take you to the hospital and they’ll put you under, they’ll fix your teeth, and then you’ll wake up and be a little groggy but you’ll be fine.”

Gabriel: “OK Mom, got it. I’ll be fine. Thanks.”

In my dreams.

We had the makings of a perfect storm ahead of us, with the potential of a truly traumatic experience for our little boy.

While it was an outpatient procedure and he wouldn’t have to spend the night in the hospital, he was still going to have to go through a million, different tiny procedures (each of which would be difficult for him to do, and any number of these could potentially cause a meltdown):

Again, scary for any kid, but a mask on his face? He’ll probably freak out and try to rip it off.

This is the same kid who screams bloody murder if someone tries to cut his hair..

Waking up in a strange place with strange people, in PAIN

In the past he’s refused to take medicine.. How will we get him to take his pain killers?

How could I prepare him for ALL of these new experiences in a nonverbal way?!?!

How could I cushion each little blow so that he wouldn’t be completely terrified and traumatized the entire time…??

(insert deep breath here…)

Well, looking back, I truly think that God intervened, because it was right at this time that I was taking an Assistive Technology course through my Special Education MSEd program, and one thing we were studying was “Social Stories.”

Telling stories through pictures.

Not a novel idea, to be sure, but this kind of story is highly individualized and is designed to provide the child with a very specific, play-by-play of what is going to happen. And when you’re dealing with kids with speech delays, incorporating visuals is one of the most valuable things you can do.

Not only do you tell them what is going to happen, they can “see” it. It made perfect sense.

I took the idea and created a very simple “social story” for him, to show him a step-by-step playbook of what was about to happen, and ALSO, to show him what he had to look forward to after the surgery was over….

A PRESENT!

So Daniel and I sat down with Gabriel the day before the surgery, showed him this story (below), and very slowly – and very simply – talked our way through it, picture by picture.

Gabriel, tonight you’re going to go sleep, then wake up tomorrow, you’ll have a bath, and then we’ll go to place called a hospital. You’ll put on a hospital gown, and lie down in a bed. Mommy will be there and I’ll put a mask on my face, and Gabriel, you will put a mask on your face. Then you’re going to hold Mommy’s hand, look in Mommy’s eyes, you’ll start to feel sleepy, and you will go to sleep. Then the dentist will fix your teeth. Then you’ll wake up, and Mommy will have a present waiting for you! Then we’ll take you home and you can sleep.

Now. I don’t want to brag (but I admit I AM about to brag a little… 🙂

It worked. And it worked SO well…!

Truthfully, when he saw “present,” that was it. After that moment, he talked about nothing else.

“Present?! Present?! Present!!!”

Not about the anxiety of going to the hospital, or a mask on his face, or having his teeth fixed, etc.

So, the next morning came, and we were ready for the worst, but he gave us his best.

ZERO meltdowns.

He was happy, calm, and compliant throughout the entire day.

A pure dream.

I brought the story with us, and showed it to him multiple times throughout the morning – just to keep it fresh in his mind – but I think I ended up being more nervous than he ever was.

I was the one who was nervous when they asked him to put on the gown, but it went off without a hitch. And I was the one who started crying when he was looking in my eyes and falling asleep under anesthesia.

He was just peaceful and brave. Pure grace.

And he woke up with the same grace with which he fell asleep. Groggy, to be sure, but not angry, cranky or even irritable.

So yes, the present was the cherry on the top, but I still deeply believe that it helped him knowing and seeing what was going to happen, so there were no surprises.

And, he LOVED his present! (a Wii game he’d been wanting).

Very well-deserved, my love.

Since then, we’ve used similar-style social stories for many things, such as before we jet off for a summer vacation, but I’ve never had a social story work as well as it did for Gabriel and his dental surgery.